What Does the Word Survivor Really Mean for the Metastatic Breast Cancer Patient?

 

Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.

Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org.

 

Advocacy in Action at the 34th Annual CTRC-AACR San Antonio Breast Cancer Symposium was made possible by support from:

                    

VIDEO TRANSCRIPT:

Selma Schimmel, Founder & CEO, Vital Options International:

There’s many of us that will live with cancer and have to coexist with this disease, and the idea that we can give a voice and now faces to the issues behind living with metastatic breast cancer is the goal of Advocacy In Action.  What does the word ‘Survivor’ really mean for a metastatic breast cancer patient?

Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:

I think it means different things to different people and it’s a word that I’ve never been comfortable with even after my primary diagnosis.  People would say, “I’m a breast cancer survivor of how many years…” And I would always say, “I was diagnosed in 1996.”  It’s, I think the word is a very loaded word.  And we can argue semantics, and we do in the metastatic community- there are certain buzz words that really get people going and it’s probably not worthwhile because I finally learned you have to think of what people intend to say rather than the exact word of how they say it.  So I don’t really have a problem with other people using the word, it’s just something that I don’t use.  And I think there are a lot of definitions for it, but to me, you have lived through something that is in the past.  I never felt that way about, even after my primary diagnosis and I certainly don’t feel that way now, because I don’t think I will survive this disease, or I know I won’t.  So that’s what… that’s my problem with the word.  I understand what people say when they use the word.  And there are a lot of people with metastatic disease that do use the word.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network:

I will survive until I take my last breath and then you can say, “she no longer survives, she’s dead because I am living.”

But I agree, and I respect.  I agree totally with Maria, it’s not worth really a lot of discussion.  There are so many more important issues to worry about.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:

What we’ve heard over and over at Living Beyond Breast Cancer is, this word is very charged and it is about semantics and semantics can be important.  As, I think you had previously said, it’s not what we say but how we say it.  But we also have to be respectful and open that everybody has different interpretations.  So if I interpret it a certain way that may feel right or works for me; it doesn’t necessarily mean it works for you or the next person.  So I think as long as there is that balance of whatever language or word helps us get through the day- as you said, Shirley, you’re surviving until the last breath.  You’re living.  That works for you.  But we definitely hear, over and over, different words; whether its thriver, survivor, or a lot of push back on the term, I do think it is prevalent, it is out there and it is part of discussion.

Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org

There is another word that definitely strikes a note with many metastatic patients whom I talk with, and that is the word ‘chronic’ when it is used to applied metastatic breast cancer.  I think for many people, and in fact there was at this meeting, a whole session on metastatic breast cancer as a chronic disease.  And I think for the same reason that survivor is difficult, the word chronic is difficult because in most people’s minds it implies a long time course and an entirely manageable disease.  And for many woman, and most women with metastatic breast cancer, that is not really the course of the disease.  And I applaud you in this panel today for presenting a variety of faces of breast cancer- someone who is no evidence of disease and really doing well, and someone who is actively struggling now in the moment.  Because this really is the face of metastatic disease as we know it today.

Selma Schimmel, Founder & CEO, Vital Options International:

I want to thank each of you and hope that we walk away, we cannot problem solve in this period of time but what we can do is create tangible arguments, common language and get us all focused, so when we walk away with this Advocacy in Action it’s a call to action- whether you’re an advocate, whether you’re a researcher, whether you come out of industry or if you’re an oncologist that really has to communicate better with patients facing metastatic disease.

END OF VIDEO

 

 

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